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Fragmented yet together: the disability movement in Sierra Leone

VAN DEN BRINK, Amélie
ELBERS, Willem
IBRAHIM, Aisha Fofana
2020

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The on-going struggles of disability movements worldwide have been examined from multiple perspectives. As of yet, however, research into this topic has largely overlooked experiences on the African continent. This article seeks to address this gap by presenting a case study of the disability movement in Sierra Leone, West Africa. The study finds that on the one hand the Sierra Leonean disability movement is fragmented (referring to the tendency of groups to work individually as opposed to operating in a collective manner), thus limiting synergy. Three main ‘centrifugal’ forces underlying fragmentation are identified: resource scarcity, impairment specific interests and capacity differences between impairment types. On the other hand, the movement somehow manages to survive and even achieve modest successes. The research shows that interdependence, shared experiences of marginalization, and a clear identification of the ‘other’ have a unifying effect.

  • The disability movement in Sierra Leone is fragmented, meaning it struggles to formulate a unified position and act collectively, yet somehow survives and even manages to achieve some successes;
  • The fragmentation is fueled by competition between groups, a hierarchy between impairment types and interests that are impairment specific.
  • The movement is kept together by mutual dependence to achieve key goals and raise funds, shared experiences of marginalization and negative experiences with ‘outsiders’.
  • The research offers recommendations to disability groups and donors to mitigate fragmenting forces while strengthening unifying forces.

Loneliness in life stories by people with disabilities

TARVAINEN, Merja
2020

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This study investigates loneliness in life stories by people with disabilities. By approaching loneliness from a relational perspective, this study attempts to illustrate how loneliness and disability are intertwined in the life course. The research question was as follows: How do people with disabilities understand loneliness in their life stories? Life story data ‘Life of Disabled Persons in Finland 2013–2014’ was analysed with a narrative life course approach. Loneliness was narrated in accordance with normative life course expectations. People with disabilities narrated loneliness as unbelonging in childhood, disjointed youth and disaffiliation to normative institutions in adulthood. This study suggests that relation between loneliness and disability concern the conditions of inclusion that is the conditions of living and telling.

  • Loneliness involves both unwanted emotions and social isolation. 
  • In many societies, both loneliness and disability bear a stigma. This so-called double stigma affects the lives of people with disabilities.
  • This study explores loneliness and disability in life stories by people with disabilities in Finland from a life course perspective. Although scholars have widely studied loneliness in Finland, they have not studied loneliness in people with disabilities in any great depth.
  • Loneliness in life stories by people with disabilities was narrated in relation to a sense of bodily difference and occurred as a disconnection from a socially ‘standard’ life course. Loneliness was located within three main phases: childhood, youth and adulthood. Negative attitudes towards disability feed social isolation and emotional loneliness.
  • Further research on disability and loneliness throughout the life course as well as more discussion about the conditions of inclusion and the emotional patterns of social relations are needed.

Aesthetics and the perceived stigma of assistive technology for visual impairment

DOS SANTOS, Aline Darc Piculo
FERRARI, Ana Lya Moya
MEDOLA, Fausto Orsi
SANDNES, Frode Eika
2020

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Purpose: 

The aim of this study was to identify factors that influence the perceived stigma of two assistive devices for visual impairment, namely the white cane and smart glasses.

 

Method: 

Face-to-face semi-structured interviews with eight European students were conducted to probe their experiences and knowledge related to disability, assistive technology, visual impairment, as well as handheld and wearable devices.

 

Results: 

Close relationships with disabled people seems to have a positive influence on participants perceptions about stigma, disability, and assistive technology. Academic background seems to not have any influence. The aesthetics of assistive devices was observed as an important factor that influences the adoption or abandonment of the device.

 

Conclusion: 

Device without negative symbolism but with modern aesthetics (smart glasses) were positively accepted by the participants than the device with traditional aesthetics and symbolisms of visual impairment (white cane). Designers should, therefore, consider aesthetics in addition to functionality in order to avoid the perceived stigma, thereby reducing the chances of device abandonment.

The impacts of COVID-19 on people with disabilities: a rapid review. Disability Inclusion Helpdesk Query No: 35

MEANIE-DAVIS, Jessie
LEE, Harri
CORBY, Nick
April 2020

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There is currently very limited data and evidence on the impacts of COVID-19 on people with disabilities and pre-existing health conditions, with no disability-disaggregated data on mortality rates available in the public sphere. However, reports from the media, disability advocates and disabled peoples’ organisations (DPOs) point to several emerging impacts, including primary and secondary impacts including on health, education, food security and livelihoods.  Most of the available data is from high income countries (HICs) though reports from low- and middle-income countries (LMICs) are likely to emerge. Evidence was gathered by a rapid desk based review. Gaps are identified. 

 

The section concerned with lessons drawn from similar epidemics draws heavily on lessons learned from the Ebola outbreak in West Africa in 2014-2016, and touches on lessons from the Zika outbreak in 2015-2016 and the SARS pandemic in the early 2000s.10 It also touches briefly on SARS, MERS and H1N1 (swine flu). 

 

Primary and secondary impacts of COVID-19 on people with disabilities are reviewed.


People with disabilities are disproportionately impacted by COVID-19 not only because it can exacerbate underlying medical conditions, but because of attitudinal, environmental and institutional barriers to their participation in and benefit from the pandemic response. For example, inaccessible public health messaging and healthcare facilities, and stigma and discrimination.

Disability Royal Commission: WWDA’s response to education and learning issues paper

SANDS, Therese
April 2020

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In 2019 the Disability Royal Commission released an issues paper on education and learning. The issues paper asked 13 questions based on some of the key issues and barriers experienced by students with disability.

Women With Disabilities Australia (WWDA) have now submitted their response to the issues paper which highlights key recommendations to improve the lives and experiences of students with disability. The recommendations stem from the following key areas:

  • Inclusive education
  • Intersectionality
  • Inequality and discrimination underpin violence
  • Restrictive practices – torture and ill-treatment
  • Exposing violence – desegregated data and intersectionality
  • Building strengths through inclusive education

Annotated bibliography: Disability and gender in low- and middle income countries (LMICs)

ROHWERDER, Brigitte
March 2020

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This annotated bibliography provides an overview and outlines key messages from a selected range of academic and practioner literature looking at gender and disability in low- and middle-income countries, which may help with planning for gender inclusion in programmes and projects. The papers included here are not intended to be an exhaustive list of all the relevant literature. A focus is placed literature looking at the main areas of work of the Disability Inclusive Development programme: stigma, livelihoods (which also applies to the Inclusion Works programme), education, and health, as well as humanitarian contexts. Literature which focuses solely on one of these areas has been included in the relevant sections, and those which address multiple areas are included in the first, overarching section on gender and disability. As is often the case, the literature on gender and disability in low- and middle-income countries has a tendency to focus mainly on the experiences of women and girls with disabilities. There is a lack of evidence relating to gender and disability in low- and middle-income countries, although more evidence is emerging as awareness of the importance of the issue grows.

 

People with disabilities face exclusion and discrimination on the grounds of both their gender and their disability, as well as other intersecting factors such as age, race, class or poverty. The intersectional nature of discrimination and inequality impacts all areas of life, from access to services, personal security, livelihoods and leisure, through to individual choice and autonomy. Women and girls with disabilities are more likely to face discrimination and exclusion than people without disabilities and compared with men and boys with disabilities. Their participation in education, livelihoods, and healthcare is challenges by barriers including stigma and cultural practices resulting in discrimination and prejudice, lack of accessible services, and lack of support from family, teachers and institutions - all of which are exacerbated by poverty. Women with disabilities are also at greater risk of physical, mental and sexual abuse and because of stigmatisation, have lower marriage prospects. Therefore, it is important to ensure the meaningful inclusion of women and men with disabilities in programming.

 

The annotated bibliography is broken down into;

1. Gender and disability in LMICs

2. Gender, disability, stigma, and violence

3. Gender, disability, employment and livelihoods

4. Gender, disability, and education

5. Gender, disability, and health

6. Gender, disability, and humanitarian response

7. Report information

 

The Inclusion Works programme (2018–2022), funded by the UK Department for International Development, aims to improve employment rates for people with disabilities in Bangladesh, Kenya, Nigeria, and Uganda. 

 

Disability Inclusive Development (DID), also funded by the UK Department for International Development, aims to improve the long-term well-being and inclusion of people with disabilities through increased equitable access to: Quality health services and health outcomes, Quality education and educational attainment, Jobs/self- employment and improved livelihoods and a reduction in negative stereotyping and discrimination in Bangladesh, Kenya, Nigeria, Tanzania, Jordan and Nepal.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Being differently abled: Disability through the lens of hierarchy of binaries and Bitso-lebe-ke Seromo

LESHOTA, Paul L
SEFOTHO, Maximus M
February 2020

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Background: Despite its acceptability, the term disability has not been able to shirk the sense of incompleteness, lack, deprivation and incapacitation embodied in the prefix ‘dis-’. The current wave of anti-discrimination on disability issues, calls for constant re-examination of the language and the appellations we use in respect of people with disabilities.

 

Objectives: The aim of this study is to subject the term disability to some relevancy litmus test with a view to prevent it from acquiring Lyotard’s ‘grand narrative’ and to propose and argue for the term ‘differently abled’ because of its transformative and anti-discriminatory slant.

 

Method: The study took the form of a literature review using the optic of Derrida’s hierarchy of binaries and the Sesotho proverb, ‘Bitso-lebe-ke seromo’, (A bad name is ominous) to explore the connotations of the term disability as a disenfranchising social construct.

 

Results: Read through the lens of Derrida’s idea of difference, disability as a concept has no inherent meaning and its meaning derives from its being differentiated from other concepts. Viewed through the lens of Bitso-lebe-ke seromo and read in the context of its deep symbolical significance, the term disability holds immense spiritual power.

 

Conclusion: The study concludes that the term disability or disabled is exclusionary, stigmatizing, and anti-transformational. As such it embodies imperfection, incapacitation and inferiority. Not only is it ominous, it places upon people with disability the perpetual mark of unattractiveness. Against this background the term differently abled seems to convey more empowering overtones than the term disability.

 

 

African Journal of Disability, Vol 9, 2020 

Intersection of disabilities and violence against women and girls in Tajikistan

MASTONSHOEVA, Subhiya
February 2020

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This report is a study into the intersection of gender, violence and disabilities, with a focus on the role of disabilities in increasing the risk of sexual and gender-based violence and domestic violence perpetrated against women with disabilities and women parenting children with disabilities in Dushanbe, Bokhtar and Khorog (Tajikistan). The study targeted women and men between the ages of 18-65 living with disabilities or parenting children with disabilities. Field data were collected through 12 focus group discussions (four in each location) divided by age and gender, with men and women living with disabilities or parenting children with disabilities. 30 repeat in-depth interviews were conducted with women and men with disabilities among different age groups, as well as women with children with disabilities.

Required to be creative. Everyday ways for dealing with inaccessibility

WÄSTERFORS, David
2020

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Today’s society promises that people with disabilities can access anything, but in practice there are numerous obstacles, and the ways in which people deal with them can be easily missed or taken for granted by policy makers. This article draws on a project in which researchers ‘go along’ people with disabilities in Sweden who demonstrate and recount accessibility troubles in urban and digital settings. They display a set of mundane methods for managing inaccessibility: (a) using others, (b) making deals and establishing routines, (c) mimicking or piggybacking conventions, (d) debunking others’ accounts and performing local politics. The employment of these shared but tailored methods shows the difficulties to be accepted that people with disabilities still face, as well as the wide-ranging tension that exists between the grand rhetoric of inclusion and modest results. The tension implies that people with disabilities are required to be creative.

  • Declarations and policies often say that people with disabilities should have access to anything, but in practice this is not the case.
  • This study investigates what people with disabilities actually do when they have trouble accessing various places or resources. The results show their common and practical ways, and these ways are often taken for granted, overlapping, and combined.
  • People with disabilities ask others to support them when they face troubles to access places or resources, they make deals with important actors and they develop routines. They also observe, imitate and follow others’ actions, to pick out precisely those ways that suit their needs.
  • When people with disabilities find their ways in today’s society they also act with words. They argue against other people’s excuses or justifications for not providing access.
  • The study has found a lot of frustration among people with disabilities who get blocked, excluded or delayed. This gives them motives to engage in politics.

Marriages among people with disabilities in 19th-century Sweden: marital age and spouse’s characteristics

VIKSTRÖM, Lotta
HAAGE, Helena
HÄGGSTRÖM LUNDEVALLER, Erling
2020

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While marrying was an expected event in 19th-century Western society and has been subject to much historical research, there are few studies on how disabilities influenced people’s marriage patterns and spouse selection. The aim of this analysis is to contribute clarification on this issue by examining with whom disabled men and women married and the marital age and socio-demographic characteristics of them and their spouses. In total, 188 disabled individuals born in the first half of the 19th century and who married in the Sundsvall region, Sweden, are studied. The results reveal that disabled men and women did not marry each other, and they entered into marriage at a slightly higher age than the average, although there was usually no marked age gap between them and their spouse. Endogamous patterns were primarily found regarding the socio-spatial background of the two spouses. This analysis is one of the few studies identifying the mar- riages among a comparatively large number of disabled people using demographic data. Their participation in the partner pool highlight their agency historically and emphasize that disability did not lead to distance from social life in past society.

 

 

#COVIDdisability: Disability-related resources for families

CANADIAN ASSOCIATION FOR COMMUNITY LIVING (CACL)
2020

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A series of disability-related resources related to the COVID-19 pandemic for people with intellectual disabilities and their families.

 

Topics include:

  • Trusted COVID-19 Information
  • Plain Language Information
  • COVID-19 and Discrimination 
  • Information for Caregivers
  • COVID-19 and Government Support
  • COVID-19 and Mental Health
  • Accessible Information on COVID-19
  • Emergency Preparedness and People with a Disability

Poverty and social exclusion of persons with disabilities (2020) - European Human Rights Report Issue 4

HAMMERSLEY, Hayden
2020

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The extent of the effect of poverty and social exclusion on persons with disabilities in the EU was examined

The report shows how, in all EU countries, persons with disabilities are more likely to be poor and unemployed than persons without disabilities. It presents actions that the EU, it's Member States and other European Countries should take to improve the situation.

Advancing equality - How constitutional rights can make a difference worldwide

HEYMANN, Jody
SPRAGUE, Aleta
RAUB, Amy
2020

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Combining a comparative analysis of equal rights in the constitutions of all 193 countries with inspiring stories of activism and powerful court cases from around the globe, the book traces the trends in constitution drafting over the past half century, and examines how stronger protections against discrimination have transformed lives. Looking at equal rights across gender, race and ethnicity, religion, sexual orientation and gender identity, disability, social class, and migration status, the authors uncover which groups are increasingly guaranteed equal rights in constitutions, whether these rights on paper have been translated into practice, and which nations and protections from discrimination lag behind

Measuring Stigma related to People with Albinism in Tanzania: A Cultural Validation Study of the EMIC-CSS and SDS among Adults

DE GROOT, Tjitske
JACQUET, Wolfgang
MEURS, Pieter
PETERS, Ruth
2020

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Purpose: People with albinism in Tanzania are severely stigmatised. A measurement tool to assess this stigmatisation among adults is lacking. This research aimed at the cultural validation of two Scales to measure stigma related to albinism: The Albinism Social Distance Scale (A-SDS) and the Albinism Explanatory Model Interview Catalogue Community Stigma Scale (A-EMIC-CSS).

 

Method: Conceptual, item, semantic and operational equivalences were evaluated through focus groups and interviews. A pilot study among adults attending religious institutes, as a representation of Tanzanian society, was conducted to assess the measurement equivalence. There were 101 respondents for the test and 79 respondents for the re-test.

 

Results: Conceptual, item, semantic and operational equivalences of the Scales are sufficient. In terms of measurement equivalence, the internal consistency of the A-SDS and A-EMIC-CSS are adequate. However, social desirability should be taken into account when interpreting the findings.

 

Conclusion and Implications: The insights provided by this article can aid in the development of tools to measure stigma cross-culturally and across stigmatising conditions. The combination of the two Scales for short and long-term effect measurement is recommended.

Amplifying the voices of women and girls with disabilities in Zimbabwe

UNESCO OFFICE HARARE
LEONARD CHESHIRE DISABILITY (ZIMBABWE)
AFRICA COMMUNITY RESEARCH AND DEVELOPMENT CENTRE
2020

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This qualitative study on the aspirations, needs and concerns of women and girls with disabilities in Zimbabwe seeks to contribute to the growing knowledge on women and girls with disabilities globally, as well as to contribute to the ongoing dialogue on advancing the implementation of the CPRD in Zimbabwe

 

The specific aims were to:

  • Assess the demographic and socioeconomic characteristics of women and girls with disabilities
  • Identify the aspirations of women and girls with disabilities from marginalized areas
  • Describe the needs and concerns of women and girls with disabilities for equitable participation in public life
  • Assess how current development interventions are responding to the needs of women and girls with disabilities, specifically SRH and GBV services delivery
  • Hear from women and girls with disabilities on practical recommendations for the advancement of disability rights and improving justice, SRH and GBV service delivery that meets their needs

 

The approach and methodology were designed with a view to gathering first-hand information and verbatim from an estimated 261 women and girls with disabilities, and from other stakeholders interviewed in marginalized areas, namely caregivers, OPDs, NGOs, traditional leaders, community cadres, and government officials. The study design was also guided by a range of participatory approaches that enabled women with diverse disability types to effectively participate in the qualitative study.

Harmful cultural beliefs and practices, stigma and discrimination towards women and girls with disabilities: a toolkit for change

UNESCO OFFICE HARARE
UNITED NATIONS PARTNERSHIP TO PROMOTE THE RIGHTS OF PERSONS WITH DISABILITIES
2020

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This toolkit serves to highlight the intersection between gender, culture and disability. Following the completion of a study titled Advancing the rights of women and girls with disabilities in Zimbabwe, a review of the interface of culture, gender and disability in Zimbabwe, it was evident that there were cultural and social issues not being adequately addressed in communities. 

This toolkit was formulated based on the study findings, dialogue with key disability stakeholders and principles of the CRPD.

The following is a list of the key articles from the CRPD that form the base of this toolkit:

  • Article 3: General principles (8 in total)
  • Article 6: Women with disabilities
  • Article 8: Awareness raising
  • Article 13: Access to justice
  • Article 23: Respect for home and the family
  • Article 25: Health

This toolkit strives to empower the trainer and the trainee(s) on the virtues encapsulated in the CRPD by localizing the concepts at community level in Zimbabwe.

What I think of school: perceptions of school by people with intellectual disabilities

VALENTIM, António
VALENTIM, Joaquim Pires
2019

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For people with intellectual disabilities who do not enter the labour market, school is usually the main chapter of their socialization with the wider society. Nevertheless, little is known about their long-term perceptions of this period. We conducted interviews and focus groups on the school experiences of 16 Portuguese adults with intellectual disabilities. Results show differences between older and younger participants in their accounts of social relations and educational methods, which result from changes in special educational policies in Portugal. Overall, members of both groups evaluate their school experience positively. Our results indicate that although there is a move towards more inclusive schools, discrimination is still prevalent. These results are discussed in terms of their psychosocial consequences, as well as their implications for educational policies, and inclusion. This study contributes to a better understanding of the school experiences of people with intellectual disabilities and how policies impact them.

Instating settings of emergency education in Vienna: temporary schooling of pupils with forced migration backgrounds

PROYER, Michelle
BIEWER, Gottfried
KREUTER, Linda
WEIß, Jekaterina
2019

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In the year 2015, Austria was one of the main European destinations of displaced persons. According to education authoritiesaround 15,000 children with a forced migration background of school age who arrived in Austria over the course of a few months from late2015 to the beginning of 2016 called for immediate and partly temporary solutions. Due to Austrian legislation and unlike other countries,every child living in Austria between the ages of six to fifteen (or for nine years of schooling) is entitled to receive compulsory education. Though the school administration of Vienna generally promotes an inclusive approach to education in regular schools, schools inneighbourhoods with a large refugee population were reportedly unable to provide appropriate and adequate education for all children. Inresponse, the local school authority in Vienna decided to establish temporary classrooms in refugee accommodations. This article describesand analyses the emergence of new educational structures from the point of view of university students and lecturers who took part in theone and a half years of its implementation. The article thereby aims to document specific perspectives on educational emergency measuresat a certain point of time. In both the primary and secondary sectors, the emergence of a new temporary field of specialised and exceptional education were observed and recorded in a thick description of dynamic processes of trans-institutional, trans-organisational, transprofessional, communal, and individual development. Thus, the article presents a multifaceted picture of problems in refugee education under exceptional circumstances. The findings illustrate how insufficient educational opportunities for those falling outside the age of compulsory schooling – in particular, preschool children as well as youth older than fifteen – diminish possibilities for the inclusion of these children within and beyond education.

Standing alone: sexual minority status and victimisation in a rural lower secondary school

ODENBRING, Ylva
2019

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Studies worldwide indicate that sexual minority students often face different forms of bullying in everyday life at school, and young people growing up in communities with conservative values, such as in rural areas, are often in a particularly vulnerable position. Nonetheless, there is an absence of studies addressing the everyday lives of sexual minority students in rural schools. Drawing on interviews with students in the ninth grade of a rural lower secondary school in Sweden, the current study has investigated experiences of violence and harassment routinely directed at sexual minority students at school. The results indicate that the local gender regime is strongly framed by heteronormative values that position non-heterosexual students as the Other. Sexual minority students are exposed to homophobic name-calling on a daily basis, and threats and physical violence are also common. To fit in and to ‘survive’ in school, sexual minority students are forced to accept the homophobic name-calling and are sometimes also forced to physically fight back. This study concludes that it is important that schools address issues around violence directed towards non- heterosexual students, and that ways to create a more inclusive and safe school environment be identified.

Disability stigma in the Inclusion Works programme countries: an overview of the evidence

ROHWERDER, Brigitte
November 2019

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This report draws on and expands previous work looking at disability stigma in developing countries (written for K4D) and information on stigma in the situational analyses and labour market assessments of the four Inclusion Works programme countries. Factors which contribute to disability stigma, differences in the extent of stigmatisation and issues measuring stigma are discussed. An overview of disability stigma in each of the specific countries (Kenya, Bangladesh, Nigeria and Uganda) is provided. Interventions to reduce disability stigma are outlined, including interpersonal, intrapersonal and governmental/institutional interventions.

 

The Inclusion Works programme (2018–2022), funded by the UK Department for International Development, aims to improve employment rates for people with disabilities in Bangladesh, Kenya, Nigeria, and Uganda.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

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